“The Trisomy 18 Foundation was my life line. The staff there helped me through the darkest days of my life from the time our daughter was diagnosed with T18 until she died and even after. If anyone you know is pregnant with or has a T18 baby, tell them about the Foundation.”

Nevaeh Faith’s Family

“The morning of February 4, 2003 we were getting ready for my Grandfather’s funeral, when the phone rang. It was the genetic counselor calling with the results of my amnio. She confirmed what we already knew deep down in our hearts: full Trisomy 18. So here I am, dealing with the death of my Grandfather and the imminent death of my daughter. I really didn’t know how I was ever going to get through this.”

In October of 2002, Dawn found out she was pregnant with her third child. She and August were very excited and had declined all prenatal tests except for a level 2 u/s. They had never done any testing with their other two children, and they knew they would be getting more precise ultrasounds this time since their first child was born with Amniotic Band Syndrome. While Amniotic Band Syndrome is not genetic, the doctors wanted to watch for it again since it was undiagnosed until their baby’s birth.

So the 18 week ultrasound was a family affair, with Augie, Desiree, & Dylan all going along. They all wanted to see the baby and hoped to find out the sex, expecting nothing but good news. And right away the technician informed them that they were having a little girl. Despite the excitement, Dawn had a feeling that something just didn’t seem right. The technician would look at her heart for a long time, then she would move to something else and then keep going back to her heart. After about an hour she finished up and said she wanted the Perinatologist to come and take a look at their little girl, because she was concerned about a few things.

The Perinatologist informed them that it looked as if their baby had a chromosomal disorder, that they found a lot of markers for something called Trisomy 18, and that this disorder is incompatible with life. Dawn remembers, “As our family sat and cried hysterically because our hearts had just been ripped apart, she explained their findings. They saw she had a strawberry shaped head, a flat facial profile, a two vessel umbilical cord, a ventricular septal defect (VSD) in her heart, clenched hands, abnormal foot posture, a left-side cleft lip, and she was measuring small. These were all classic markers for Trisomy 18, but they said the only way to know for sure was with an amnio.”

“I can’t believe they just told me my child was going to die. Why was this happening to us? Why did this happen to her? Why can’t they help her? It wasn’t fair; I wanted this baby so much. At this point I was ready for someone to wake me up from this horrible nightmare. They had a genetic counselor come talk with us right away to try to explain things a little better. Then we had to decide if I was going to have the amnio, because they could do it right then. I was still so confused about everything, but I just had to know. They had everything ready as soon as I gave the ok, I can hardly even remember it. I think the only reason I made it through the procedure was because my body was still in such shock. I was numb, and just closed my eyes and cried. Everything went perfectly and we were sent home to rest. We were told that we could get the FISH results in 2 days and the full results in about 10-14 days. “

And so they had the amnio, which simply verified what they already knew to be true: their sweet baby had Trisomy 18. The next hurdle was deciding if they were going to terminate or carry to term. “I did lots of crying and reading of other’s journeys of T18. They were all so different, but all the same. Each story was about a baby with a fatal diagnosis of T18. All these babies had different amounts of time with their families, but were all loved and missed. As difficult and scary this whole situation was to our family, we finally came to the conclusion that we were going to carry to term. We felt it was not up to us to determine when our little girl was going to die. God decided to give us this wonderful angel, so he should be the one to determine how long she is to stay with us. Our job now is to just love and cherish every moment we have with this precious baby.”

It was important for them to find the right name for their daughter. “We started searching through names, looking at their meaning; we wanted something perfect for our little girl. We all seemed to agree that we like the name Faith, we all seemed to have faith that she would get to spend some time here on earth with us. Then a neighbor of ours told us about her great-grandaughters name, Nevaeh(Na-Vay-A), it is HEAVEN spelled backwards. Hearing this gave me chills and I instantly started to cry, and at that moment I knew this was the most perfect name for our future angel! Nevaeh Faith it was from that moment on.” As the pregnancy progressed, Dawn had a few more ultrasounds that showed some abnormalities in her daughter’s brain, that she had a horseshoe shaped kidney (kidney’s never separated) and that her growth was starting to fall behind by almost 3 weeks. She also had a fetal echocardiogram done to determine exactly what was wrong with her heart. It confirmed the VSD, and also showed she had a coarctation of the aorta. Since her heart defect was so bad, Dawn and August decided to do comfort care if she made it past birth. “We did not want to put her through any unnecessary procedures, when there were no guarantees. We feel it is up to God to decide when it is her time to go home to heaven.”

Dawn’s pregnancy went well, at every doctor visit she measured right where she should, and the baby always had a steady heartbeat. She was always active and got the hiccups many times a day. Except for the Level II ultrasound, they might never have known anything was wrong until her birth. August and Dawn prepared themselves and their family to let their daughter go when it was her time. They had made a birth plan and then met with the funeral home to make arrangements. They bought their plots at the cemetery, and tried to enjoy her life while waiting for her birth. Planning a birth and death at the same time was very heart wrenching, but Dawn and August were convinced that, “God had given us this little blessing for a reason; we just did not know why.”

Since her labor and delivery was so fast with her son, they decided to induce early to make sure everything went as smoothly as possible, and to allow everyone to be present at the birth. Dawn was 38 weeks on June 12, 2003 when they started the induction. Just a few short hours later at 6:35pm Nevaeh Faith was born. Her heart rate was very low (20bpm), and she was not breathing. “She was instantly placed on my stomach, and her color was a bluish purple and she was not moving. We were not sure if she was going to take a breath, so we had a nurse go get the kids. Then the second the kids walked in the room and started talking, she gasped for some air and let out a cry. It was amazing, her heart rate shot up to over 100bpm and she started to pink up right away. We believe she was just waiting to meet her sister and brother. She weighed in at 4lbs 2.6oz and was 17in. long.”

“We spent about an hour together as a family, taking pictures, and passing her around. Dylan didn’t want to hold her; he was a little scared of her cleft lip, which we told him was ok. We knew he cared about his little sister; he would sneak a peek at her when he thought nobody was looking. Desiree was so happy to be holding her little sister. She just picked her up out of my arms and walked away like it was no big deal. For a moment, it felt like we had a healthy baby and nothing bad was going to happen. It was such a happy time. We were so thankful that she had made it and thought it was time to meet the rest of her family. So one by one, she got to meet her Grandparents, Aunts, and Uncles, and family friends. Knowing that she could leave us at any time, we had the hospital chaplain, surrounded by family and friends; baptize Nevaeh 2 hours after her birth. She was given the most beautiful gown from the hospital for the occasion.”

”Augie and I took turns taking little naps throughout that night. We just did not want to sleep in fear of what might happen. The next morning, the pediatric cardiologist did an echo on Nevaeh. The news was not good; he said that the coarctation was so bad, that when her ductus artery closes she would not live more than a few minutes. The ductus usually closes within 24-48 hours after birth. After hearing this, we decided that she needed to be at home. We met with Hospice to arrange for nurse visits, and to get some oxygen tanks. We left the hospital only 23 hours after giving birth.”

”Our first night home was very rough; Nevaeh had her first apnea episode. She stopped breathing for about 5 minutes, and then came back to us. It was our first realization that she could leave us at any moment. She had quite a few more episodes throughout the night. Every time we would hold her close, kiss her, tell her we loved her, and just rub her chest and back to try to stimulate her. We agreed on no resuscitation and the physical stimulation was the best we could do, since the stimulation will not bring her back if it was not meant to be. We had great support from our family that first night. They stayed with us during the entire night, and everyone took turns taking naps just to stay awake with us.”

”Early morning people started to leave, Desiree and Dylan were sleeping and we were exhausted. Augie and I decided that we needed some sleep also, and if she passed while we are sleeping, we would be at peace with that. We kissed her and told her we loved her. Watching her struggle to live was too much for us. We lay down together, with Nevaeh in between us, to get some rest, not expecting her to be with us when we woke. Desiree woke up first and saw that she was not breathing and was blue. She was scared and didn’t know what to do, so she woke us up. We had no idea how long she wasn’t breathing. So I picked her up, kissed her and we all started to say our goodbyes. Then as I gave her to her daddy she gasped and started to cry, and she started to pink back up right away. ‘What a little fighter!’ we thought. She just was not ready to leave us.”

”We decided it was time for her first bath at home. The kids helped me wash her up as daddy videotaped this special moment. We dried her off, put some lotion on her, got her dressed and went on with the day. We could not have asked for anything more from her. She had given us so much more than we ever expected.”

Nevaeh was doing better than expected, so August returned to work part time, and the family was starting to get back to a normal routine. Before they knew it June and July had come and gone. The weeks had flown by. During that time they had a lot of fun with Nevaeh, and created some wonderful memories. “She was able to meet so many more people than we ever expected her to meet. She was with us through Father’s Day, the 4th of July, and a few family and friends birthdays. We also took her to the Zoo and to the Mall of America. We tried to keep our lives as normal as possible. A hospice nurses would come at least once a week to give her a little check up and we took her to the Dr for a few check ups.”

”We knew the end had to come sometime, but when? On the morning of Tuesday, August 12, 2003 we went to take a look at a house we hoping to move into. I walked Nevaeh around to show her all the rooms, and then I just stood in the kitchen cuddling her as I looked outside to see Dad and the other kids in the backyard. It was beautiful, almost a dream come true. Nevaeh also had a Dr. appointment for her 2-month check up so we had to get going. She weighed in at 4lbs 10oz and measured 19in long. She had a little stuffy nose, but everything seemed fine. Her lungs were clear, heart sounded like it always has, so we discussed starting her immunizations. At first we were going to start them that day, but we all decided to wait a few more weeks and try to get her to gain a little more weight. We scheduled her next appointment and went home to relax.”

”It was almost dinnertime so Dad and Dylan went to pick up some food. We expected Desiree to be coming home any minute from going out with a friend, so Nevaeh and I just relaxed in the recliner like always. I had made a few calls to let people know how her check up went and then just sat and cuddled with her as she was sleeping peacefully on my chest. She was due to eat so I was just waiting for her to wake up. Then all of a sudden she stiffened up, made a grunting noise and went limp. This is what she does when she is having an apnea spell. I had checked her breathing, nothing. I listened for a heartbeat, and it was there. So I just sat and held her, rubbing her chest a little and telling her how much I love her, like we always did. After about five minutes of not breathing, I checked her heart again. It was beating very slowly, but it was still there and she was gasping for air every few minutes. I just kept saying to myself that she has done this before and has been fine, so I am not going to call Augie and alarm him.”

”When he walked in the door, he knew something was wrong. I told him what happened and that she still was not breathing. We started to feel like this was it, so I called to see how long before Desiree was to be home. They had just pulled up so I ran out to get her; we all needed each other at this point. We sat around Nevaeh crying, telling her we loved her and let her know it was OK if she needed to leave us now. There was nothing we could do. At about 6:20pm, I listened for a heartbeat, and heard nothing. I checked again five minutes later, still nothing. SHE WAS GONE. Just 15 minutes shy of the exact time she was born two months before. It was so peaceful; she was free of pain.”

“It was a very sad time, but happy also. She knew how much everyone around her loved her. Family and friends were called so they all had a chance to say their goodbyes. We took lots of pictures and just spent some very peaceful time with her. We held her and loved her for the next 7 hours. It was very hard to sleep that first night. For the last 2 months I slept in a recliner with her on my chest, we would fall asleep to the TV (for light) and the Oxygen concentrator running. Now it just seemed too quiet. All we could do was cuddle up with our other two kids on the floor and fall asleep together, as a family. We did this for a while after she passed. We just were not ready to get back to our lives without her. We had to use the memories of her to fill the gap we all felt in our hearts. We knew from that moment on, things would never be the same.”

”We had her funeral 4 days later on Saturday August 16, 2003. It was warm, sunny, & not a cloud in the sky. It was so beautiful; we had over 100 people in attendance. Nevaeh touched so many people’s hearts in the short time she was here on earth! We played the song “Streets of Heaven” by Sherrie Austin and my sister read an untitled poem by Carrie Donovan (I found it on the internet):

We knew little that morning that God would call your name, In life, we loved you dearly, In death, we do the same.

It broke our hearts to lose you But you did not go alone. For part of us went with you The day God called you home.

You left us beautiful memories Your love is still our guide And though we cannot see you You are always at our side.

Our family chain is broken And nothing seems the same But as God calls us one by one The chain will link again.

”I am so thankful that God chose us to be the family of this special little girl. She will always be Our Little Angel. Nevaeh taught us how precious life can be and we need to slow down and appreciate the time we all have together. She spent the majority of her life in the loving arms of her family, literally. It gives me peace to know that her life was filled with love and only love. We are all stronger and better people for knowing her. She will forever live in our hearts, and someday we will all be together again. “

”Just 2 ? weeks after Nevaeh passed, we found out that she was going to be a big sister. We have been told that Nevaeh should expect a little sister around May 12, 2004. We have concluded that this little girl was hand picked by a special little angel.”

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.